Update on recommendations

This section sets out and summarises progress against the strategic recommendations from our review. In reviewing progress we asked ourselves, would we still make these same recommendations if we were to carry out our initial work today, and so do these recommendations remain valid? The summaries of progress are presented with this in mind.

Overall, there has been a reasonable amount of progress in this area. The COVID-19 pandemic created a need for new data and insight, and departments have been proactive in working both together and individually to fulfil this need.

Examples of positive work in this area include:

• The Office for National Statistics (ONS) assessed levels of well-being and anxiety and depression during the pandemic, and subsequently measured depression in adults during the cost-of-living crisis. It has published articles on coronavirus and both self-diagnosed and GP diagnosed depression, and on socio-demographic differences in use of the Improving Access to Psychological Therapies service prior to the pandemic. It used a range of methods across this work, including amending existing data collections, and obtaining external data either for secondary analysis as is, or for linking to their own data.
• NHS Digital carried out annual follow-up waves to the 2017 Mental Health in Children and Young People Survey, to explore the impact of COVID-19 on the mental health of children and young people. This was a collaborative effort across several organisations, including ONS, and is a good example of responding to emerging needs and identifying a way to collect new data quickly.
• NHS Digital used the Mental Health Services Dataset (MHSDS) to examine access to mental health services during the pandemic and has continued to expand the monthly statistics to increase the number of measures it includes and the range of topics and services it covers. During 2023 it has added a range of new metrics to its publications. This includes data relating to children and young people’s outcomes, individual placement support, urgent and emergency care, out of hours placements and restraints for the publication covering April and provisional May data, and longest waits both for adults and children and young people for the publication covering August and provisional September data.

Across all this work we have seen an increased focus on a range of demographic factors, increasing the insight offered by these various publications. NHS England has also indicated that it hopes to include further demographic breakdowns going forwards, and we welcome this positive intention.

ONS has further plans for analysis using linked data to address gaps in the evidence. In March 2023 it published details of current and upcoming work relating to mental health and suicides. The plan covers a broad range of topics including inequalities, mental health outcomes in different population groups, and some wider determinants of mental health. Some of the planned work has experienced slight delays due to resource issues, but ONS has reassured us that it still be going ahead. This is a good example of transparency so that users can see work that is planned as well as what has already taken place.

Some of the users we spoke to for this update told us that, although it is encouraging that more data linkage and insightful analysis has started to take place, they felt that there is still a need for more information in this area, not just within mental health data, but also looking across primary and secondary care data, and wider determinants of mental health such as inequalities and demographics. Similarly, they told us that although NHS England is continuing to expand the range of variables it examines within the MHSDS, they felt the dataset could still be explored to a greater extent than it currently is, for example to look at links between repeat presentations and admissions and demographic factors, such as ethnicity or employment status.

The work that has taken place so far shows a positive initial step towards addressing our recommendation. ONS’s published work plan demonstrates a solid commitment to further addressing gaps in the data. In response to our suggestion, NHS England has agreed to publish a high-level plan for the start of the 2024/25 financial year. We understand that historically the work of NHS England has been driven by policy needs, and that there is currently uncertainty surrounding future capacity. Publishing this plan will help with transparency, which in turn could help to reduce the criticism we heard from some users.

NHS England has continued to work to improve the quality of its data, both in terms of increasing the number of providers who submit data (coverage) and in relation to the levels of completeness of data from individual providers. It has supported data providers through a variety of means, including the use of webinars, workshops and documentation providing policy specific guidance. It has also developed a data quality dashboard that provides feedback on the quality of data submitted by providers, and a tailored data quality report that is circulated to providers each month, highlighting the quality of key measures and ways they can address any issues. The statisticians work closely with the NHS England Data Liaison Service Team both to support new providers and help existing providers to improve the quality of their submissions.

NHS England’s blog, which we have published alongside this update, provides further details of the activities it has undertaken in recent years to improve mental health data quality, as well as its future plans.

In addition to this, NHS England has also continued to develop its Mental Health Data Hub. As well as links to publications and mental health dashboards, the Hub contains a mental health data quality section. This features a range of dashboards providing quality information for various datasets, as well as a Mental Health Act data quality plan. The data quality information accompanying the various outputs is comprehensive and generally written in clear language, making it accessible to a range of users.

As highlighted in recommendation 1, producers have been collaborating in a variety of ways, both to expand on existing releases, and to develop new ones. This collaboration has enabled the statistics to start to answer the wider questions in relation to mental health that users raised as being important in our review.

More broadly, producers of mental health statistics appear to be collaborating and working together well overall. The Mental Health Theme Group of the UK Health Statistics Steering Group (UKHSSG) is part of a larger senior analysts forum comprising members across ONS, NHS England, the Office for Health Improvement and Disparities, the Department of Health and Social Care and the Care Quality Commission, as well as representatives from the devolved administrations. This group demonstrates a clear commitment to collaboration: it meets regularly and shares information and publications, and members have told us that they think the meetings and the group overall are effective and helpful. The Mental Health Theme Group has published an action plan and details of its membership. This will help users to understand the current priorities for mental health statistics, which supports increased trust and confidence in both the statistics producers and the statistics themselves.

We are encouraged by this collaboration and consider it is vital that these ways of working continue and develop.

In our review we highlighted user’s frustrations around difficulties accessing data from the 2014 Adult Psychiatric Morbidity Survey. These were largely due to changes to legislation and how users obtained a data sharing agreement and accessed the data.

In a progress update submitted to us in 2021, NHS Digital acknowledged that the availability of data from the large mental health surveys had not been in line with users’ expectations. Since that time, NHS Digital, now NHS England, has told us it has improved the process for applications to its Data Access Request Service (DARS) to make it quicker for users to obtain access to data. It has shared with us that there has been an increase in the number of applications via DARS to obtain data from both the APMS and from the Mental Health of Children and Young People Surveys. There has also been an improvement overall in the average length of time taken for applications to be approved and a Data Sharing Agreement to be put in place.

NHS England has shared information with us on the types of organisations accessing the data and what projects they are using the data for. Several organisations have now obtained access to the data for secondary research purposes, including staff at academic and higher education institutions, those in central government, registered charities and postgraduate students. Information on external data sharing agreements is available on the DARS web pages.

NHS England has acknowledged that access to the data is lower than in previous years. It is difficult to know whether this is due to legislative changes necessarily reducing the number of potential cases where users have an appropriate legal basis to access the data, or whether users’ frustrations have remained, leading them to not attempt to obtain access. We are also aware of barriers to sharing data more widely across government, as described in our recent report on Data Sharing and Linkage for the Public Good. To continue to make progress towards meeting this recommendation, NHS England should continue to identify and attempt to address all recommendations in the data sharing and linkage report that are relevant. We also encourage it to continue to engage openly with users, both so that users with an appropriate legal basis to do so are encouraged to apply to access and use the data for secondary research purposes, and to continue to identify and work to overcome any ongoing barriers in relation to data sharing and access. NHS England has indicated that some work is already underway to understand reasons why some applications might not progress to completion.

One further issue that users raised with us in our follow-on conversations with them was the slow speed with which data from the Mental Health of Children and Young People Surveys was being made available for re-use. At the time of these conversations, none of the 2020, 2021 or 2022 datasets had been approved for archive, although the dataset for the 2020 survey is now available on the UK Data Service website. NHS England has acknowledged that this was slow and told us that this was due to resource issues related to the COVID-19 pandemic and the merger between NHS Digital and NHS England. The findings for the 2023 survey have now also been published, meaning that there will also be a 2023 dataset. NHS England has reassured us that the three remaining datasets will be available during the first half of 2024, with those for 2021 and 2022 being the priority.